Clarkston family warns of epilepsy dangers

SUDEP is thought to be the cause of the recent death of Clarkston native Katherine “Kate” Woloson, a vibrant 27-year-old engineer working for the Clorox Co. in Baltimore, Maryland.

Kate was the daughter of Henry and Diane Woloson of Clarkston.

SUDEP, the acronym for Sudden Unexpected Death in Epilepsy, is a relatively unknown term to medical personnel and families of patients with epilepsy, according to Cindy Wright, Director of the SUDEP Institute, Epilepsy Foundation.

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With the shock of Kate’s death for her family, the Wolosons are concerned that many patients with epilepsy and their families are not aware of SUDEP as they were not.

While the statistics say one in 1000 persons die from SUDEP, if a person with epilepsy does not take their medication as prescribed, the odds can increase to one in 150 persons. Kate was taking her medications at the time of her death but SUDEP is a risk for all persons with epilepsy.

“SUDEP has been known for a long time but not a lot of attention has been given to it,” said Wright.

Kate Woloson, was an energetic young woman, who loved to travel, planning her next adventure, a trip to Dubai this fall with her sister and friends, and was always a “charmer” according to her family.

When Kate was a toddler, Diane Woloson had observed her daughter’s eye twitching and from her background in the medical field suspected something was amiss. The diagnosis was epilepsy.

Epilepsy is described as a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy according to the Epilepsy Foundation. One in 10 people have a seizure in their lifetime according to the Foundation.

Kate lived with her diagnosis of epilepsy, played tennis for Clarkston High School and graduated as a packaging engineer from Michigan State University in 2007 and traveled the world said her parents. She had a generous nature and was known to purchase lunch for servicemen anonymously.

The Woloson’s say that Kate as an adult was managing her epilepsy. There were times in college when she did not take her medicine due to the side effects according to her parents. Prior to her death, she had made visits to a neurologist in Baltimore to discuss some symptoms she was having. The parents say, Kate’s MRI and EEG were within normal ranges six weeks before she died, the last time she was checked.

If Kate’s family had been aware of SUDEP, they contend they could have at least talked with her about it. But according to the Wolosons, doctors tend not to want to discuss SUDEP because they feel it is rare and don’t want to worry the patient and family unnecessarily. Wright says SUDEP is not part of the training for neurologists and medical professionals that may be treating patients with epilepsy.

SUDEP is similar to SIDS and there doesn’t seem to be advanced warning according to Wright. Wright estimates that 3,000 to 5,000 people die from SUDEP each year.

“There is a general lack of awareness by neurologists, general practioners and medical examiners about SUDEP,” according to Wright.

“Patients with epilepsy between 20 to 40 years of age seem to be more at risk for SUDEP,” said Wright.

While researchers can’t pinpoint the cause of SUDEP, several factors seem to be related. Wright says, “Having more seizures seem to be a sign that you are ‘at risk’ for SUDEP. Stress, lack of sleep, and use of drugs or alcohol are triggers for seizures, so a person with epilepsy wants to minimize the risk of more seizures and reduce the triggers.”

Both Wright and Russell Derry, Director of Education for the Epilepsy Foundation of Michigan say “focusing on what you can control to reduce your seizures is important in reducing SUDEP.” They urge individuals with epilepsy to take their medications as prescribed and keeping a seizure journal to identify triggers for seizures.

Wright says, “Epilepsy is by nature out of the patient’s control, but you can focus on what you can do.” Wright shared that patients having more knowledge about epilepsy is important and becoming aware of the risks of the disease including SUDEP. The Wolosons agree and say,”learn all you can about the disease.”

The SUDEP Registry is working to research the sudden deaths of persons with epilepsy. They collect data on the person’s seizure history and tissue in the first 48 hours after death for research. Many times, this is difficult because medical examiners have not heard of SUDEP and other causes are listed for death.

Wright says, “The public does not think people die from epilepsy.” She shared that research for SUDEP is hampered by lack of funds because of this belief. The SUDEP Institute is working to create more awareness that epilepsy can cause death and promote more research.

Both the Wolosons and Wright are empathic that “Reaching one person with information about SUDEP matters!”

About the Author

Joette Kunse is a former school principal who writes local news stories and enhanced news obituaries about noteworthy people, a popular feature among readers. Reach the author at jkhorses@comcast.net
or follow Joette on Twitter: @InsideIndepTwp.